Three-year-old William came to CPA Wollongong when he was diagnosed with cerebral palsy (CP) at one. Thanks to support from Speech Pathologist Jo Grayson and Occupational Therapist Kathryn Boroczky, William’s parents are focussing on a future with greater possibilities.
William’s diagnosis journey began when he was about two months old. His mum, Jess, recalls how his head was very large and was starting to develop a flat side. An MRI detected MPPH (Megalencephaly-polymicrogyria-polydactyly-hydrocephalus), a rare genetic disorder which affects the development of the brain. As a result, he also Polymircogyria which caused cerebral palsy (CP), epilepsy and developmental delay.
He was diagnosed with CP at one year old, which was when he was introduced to CPA in Wollongong. All William’s limbs are affected quite significantly; he’s considered a Gross Motor Function Classification System (GMFCS) level 4. Jess explained that he has head control and can roll around but is unlikely to sit or walk unaided.
The whole experience has been incredibly challenging for Jess, Dad; Chris, five-year-old Lachlan, William (now three), and three-month-old Teddy. Jess commented on how incredible the support has been by William’s therapists at CPA Wollongong. Their expertise has helped William to progress with milestones for the past two years, and the education and skill building they’ve provided has empowered Jess and husband Chris to take care of William and themselves.
“The thing about CPA therapists is they work with children like William all the time. They’re not confronted by his disability, they understand and know what to say and do.”
Speech Pathologist, Jo Grayson specialises in swallowing. William has swallowing difficulties and it was a big change moving him from oral feeding to being fed through a tube in his belly. However, Jo is finding other ways for William to experience the taste of food, through a safe taste for pleasure program where he can have small amounts of tastes if he wants them. This means that he can join in family mealtimes and enjoy the social aspect of eating.
“William has a severe oro-pharyngeal dysphagia which means that it is unsafe for him to eat or drink a full oral diet. We have supported him to eat small amounts without him getting sick. This means that he can maintain his swallow skills and participate in mealtimes socially.” Jo Grayson
Jo has also helped Jess understand that while William may never speak, he could still communicate through assistive technology devices, like eye gaze. They trialled eye gaze technology at aged two and a half and it has transformed William’s ability to communicate. William now has his own eye gaze device and uses this to communicate. William loves the Wiggles so Jess and the therapists incorporate that into the eye gaze, making it fun and part of his everyday play. He also uses it to tell them when he wants to have his tastes or not!
“Working with William has been so much fun. He is such a bright spark and it has been so exciting getting him equipment that works for him. For Will, his strengths are his eyes so we used this to our advantage as the main way for him to access communication. We got him set up with a high contrast communication grid and then used it with activities that he enjoyed to teach him new concepts and words.” Jo Grayson
Occupational Therapist Kathryn has helped William find the right specialised equipment to suit his needs; such as a bed, shower, commode, and wheelchair. Jess describes Kathryn’s dedication and knowledge as amazing.
“Kathyrn makes sure he’s safe and that we’re safe, as he’s now 16 kg so he’s getting quite heavy to move around. Kathryn ensures the equipment is right for him.”
William also trialled the whizzy bug for 12 weeks which was a fantastic first wheelchair for him to work on spatial awareness and get ready for a powered wheelchair, which the family are now applying for. This a huge change. The chair weights around 200 kg so the family need to make some changes, like buying a new car.
“Jo and Kathryn have empowered us to have the confidence to take care of William and take care of ourselves.”
For Jess, living in a small town like Helensburgh, just outside Wollongong, is lovely and supportive and having a child with a disability there is a non-issue. People don’t stare or ask questions because they know William. And they have good access to Sydney for medical care, so although Jess admits the disability world can be confronting, it’s a huge comfort that they have the right local support and don’t feel alone.
“It gets easier, you are more accepting of the situation. You imagine when you’re pregnant what your life will be and it’s not worse, it’s just different.”
What really helps Jess is focusing on the here and now and not thinking too much about the future.
“I focus on the positives and that’s something that CPA has enabled us to do. It’s not about what William can’t do, it’s about what he can do. I just want William to be happy and healthy, and to continue having access to these incredible supports.”
